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NIQI'S STORY

Fabulous and Fighting CF
                                        
                                       Background

This is a page about a brave young lady, born with a disease called Cystic Fibrosis (CF)…and the illness that she lives with on a daily basis. (Story told by her mother, Suzanne Lucas)

NiQi was born on 21st September 1990 to a teenage single mum, in Vryheid, Kwa-Zulu/Natal. For the first 2 months of her life she was raised by her maternal grandparents, after which she was taken away by the Welfare Department and hospitalized for reasons thought to be neglect. After a month of being in Vryheid hospital and not responding to treatment, she was transferred to Greys’ Hospital in Pietermaritzburg.

After months of treatment and various tests, she was eventually diagnosed at the age of 6 months with Cystic Fibrosis. It was at this point in time that we met her through our late son’s paediatrician.  Mark was being treated at the same time for a lung infection in McDonald ward of Greys’ Hospital.  It was because of her diagnosis that both Welfare and the paediatricians thought it would be in the best interests of NiQi, to find her a foster home, instead of the alternative, which was to be sent to a children’s home.




On the very same day, three different people from three different areas of our lives contacted us to tell us about this precious baby girl that required a home! We felt in our hearts it was God’s will that maybe we bring her home and care for her.  After discussing it with our own two boys and they deciding they might like to have a sister at home with them, we began the process of fostering and were able to bring her home with us upon Mark’s release.
So, at the age of 7 months, NiQi came home to live with us and has stayed to this day….



As a youngster, NiQi enjoyed an active lifestyle and with correct diet, proper health care and a rigorous medical regime, we were able to keep her fit and healthy.  It was advantageous to her wellbeing that she preferred to be playing outside, climbing trees and being a regular ‘tomboy.’ 


She swam daily in the summer months, using both our pool at home and that at school, participating in the school swimming team.  She loved nothing better than to be active on the sports field and excelled at both netball and athletics.  She enjoyed playing hockey and even tried her best at cross country, although she did not have the stamina for long distances and most often arrived last at the finish line.  Her sheer determination to finish made her see the end of each feat and after every event said she wouldn’t run again…until the following week.

She played cricket in junior primary and was proud to be the only girl on the team, most times showing the parents of her ‘boy’ peers that a girl can field and bowl as well as any of their sons.  She owed her cricket skills to the many hours of playing with her older brothers, who honed in on her fielding and bowling skills, allowing her very little batting time.  LOL.

When at home, if she wasn’t swimming, she was racing down hills on her skateboard and tumbling down banks on her bike, or riding with her friend and neighbour, on a pony called Snowy.  Over the years her love for horses and riding has stayed with her and at any opportunity she will ride someone’s horse for them.  Taking youngsters with her and sharing her passion of these magnificent animals with them is a part of NiQi’s life she has been loath to give up.

















 In her younger years, together with Mark, our late son, she attended the cystic fibrosis clinic at Addington Hospital.  The doctors from the clinic worked hand in hand with the paediatricians in Pietermaritzburg, looking after them both. I don’t remember when we stopped attending the clinic at Addington Hospital, however it was sometime between Mark passing away in 1995, and 2000. It wasn’t that we wanted to move away, but with government policy changing, we were advised that because we did not live in the greater Durban area, we would have to attend the hospital closest to us, which was Greys’ Hospital.

It was all to do with budgeting and serving the local community and we understood the reasons fully, however it did mean that by attending Greys’ Hospital, we were not privileged to have the expertise of cystic fibrosis practitioners, as had been the case at Addington.  The paediatricians, who had in the past been part of the medical team of doctors attending to children in the hospital, were by this time no longer working as consultants at Greys’, however they saw NiQi regularly in their rooms at no expense.

When the paediatrician who consulted with NiQi on the most regular basis left South Africa to return to Holland around 2003, we had no option but to consult solely with the clinic doctors at Greys’ Hospital, none of whom appeared to have the experience required in the treatment of cystic fibrosis.  Finally near the end of 2004, a particular doctor who attended to NiQi at the general clinic decided that because her condition was in his opinion, stable, she should be transferred to Northdale Hospital.

It was at this point that we realised if we wanted NiQi to have a better life and more positive prospects, we needed to make a move away from KZN to Gauteng, to a more stable life of better healthcare.  So it was at the end of her Grade 8 year, 2004, we made the move, knowing that it was in the best interests of NiQi and any future health care that she may require.

Unfortunately when she hit puberty, her health started to show signs of decline and the older she has become, the more difficult it has been to keep her at an optimum level of health.  The move did however present another problem for her being that her asthma which had up till then been seasonal and very much under control became exacerbated with the change in air and environment.
This hasn’t helped with the deterioration of the cystic fibrosis, in fact it has hampered her lifestyle more so at times than maybe would have, had she been dealing only with the cystic fibrosis.
What many people who have little or no knowledge of the disease don’t understand, is that as normal and healthy as the person may look on the outside, it is what is happening to the body on the inside, that determines their prognosis. The disease is debilitating and because there is no cure, it is a daily battle, to try to keep the patient at a level where they can enjoy a normal lifestyle.









We settled on a plot north of Pretoria and because of both the distance and her early morning regime of nebulising and physiotherapy, she completed her schooling through Damelin Home Schooling, attaining first her ‘O’ levels and then her ‘A’ levels.
Since then she has battled to find sustainable employment because of her illness and the fact that she is hospitalized so regularly. Her dream is to one day be a photographer.  Friends and neighbours have at times very kindly lent her their cameras to document special occasions in other peoples’ lives, like weddings and birthday parties and social functions…something that she thoroughly enjoys.



 

                                  Hospitalization

NiQi usually has hospitalized treatment every 3 months.  Sometimes however, she has to be admitted earlier than that…it all depends on how she is coping between admissions.  The time of the year, different seasons, all have an influence on how she is.  For many years after moving to Pretoria, she attended the CF clinic at Steve Biko hospital.  The doctors are well qualified and learned specialists who really care for their patients. Hospitalization is usually for a period extending from 2 to 3 weeks at a time although there have been a couple of occasions when she was hospitalized for longer.  Most times, if she has a lung infection that needs treatment before the 3 month time period is up, she is given oral medication to help tide her over, however if it becomes really bad and is reduced to having added oxygen on a daily basis, it is then when she is admitted earlier.

 



One problem that has materialized with her current treatment is that she seems to have developed a resistance to ALL antibiotics but one. This makes treatment and eradication of infection much more difficult and less easily treatable.


 November 2011 she was admitted to Steve Biko Hospital, stayed 2 weeks and then returned home.  Less than a month later she was admitted once more for treatment and it was the week between Christmas and New Year that we realised how seriously her health was deteriorating and we thought we might very well lose her.

Miraculously, she pulled through and the attending doctors managed to make an appointment with a pulmonologist from Milpark Hospital, with a view to discussing a lung transplant for her.
She saw him in January 2012 and he reckoned she would be a good candidate for a lung transplant, adding that her cystic fibrosis hadn’t deteriorated too far as yet.
She continued to attend Steve Biko Hospital both at the clinic as an out-patient and in the wards for IV treatment.
In July/August 2012 she once more had a massive set back and the doctors predicted that without a lung transplant, she would not live for more than 6 months.  Her lung function had rapidly decreased to 17% and she was wheel chair bound, having no energy or strength to move around without receiving 24 hourly oxygen.




                                     Medication

NiQi has a fairly extensive list of medication that she uses on a daily basis, which is a lot for anyone to have to remember to take even for a short time period, however after all these years she has formed a pattern in her daily life, so each day she wakes in the morning or before she goes to bed, she sticks to the same routine of nebulizing and physiotherapy.  By the same token, as often as she eats a meal or snack, she reaches for the pills that will digest her food…and so each day has become habitual. Just so you may understand the enormity of such responsibility here is the list of her current medications.
No
Name
Dosage
1
Seretide
2 puffs once a day
2
Osteobon/Fosamax
1 tablet daily
3
Creon 25000
30 capsules per day
4
Zithromax
1 tablet 3 times a week
5
Ulsanic
10 ml 3 times a day
6
Ursatan
300 mg 3 times a day
7
Texa/Allergex
1 tablet daily
8
Ipvent
puffs when necessary
9
Singulair
10 mg daily
10
Tobramycin
80 mg twice a day
11
5% saline
nebulise when necessary daily
12
Nebrafin
1 ampoule twice a day
13
Losec
20 mg daily
14
Naproxin
250 mg twice a day
15
Solmucol
1 sachet 3 times a day
16
Vitamin A
200 000 IU once a month
17
Vitamin D

18
Calciferol
1 tablet once a week
19
Vitamin K
2 ½ ampoules once a week
20
Vitamin E
1 capsule daily
21
Colimycin
2 000 000 IU 2 times a day (nebulized)
22
Amikacin
1 g once a day (intravenous treatment only)
23
Ensure meal supplements
2 shakes per day
24
Protifar powder
2 scoops per shake










                              Nutrition and Feeding

In August 2012, NiQi had a Mic-Key PEG feeding tube inserted into her stomach.  Her weight had decreased at a rapid rate and if something wasn’t done to help her gain weight, her body would not have been able to cope with recurring lung infections.   The PEG allows her to ‘hook’ herself up at night time, with supplementary feeds.  These feeds add vital kilojoules to her daily intake and in turn help her gain the kilograms that are needed to help her ward off infection.
Good nutrition goes hand in hand with staying healthy and although she eats a normal well balanced diet, it is not sufficient to add the weight that she needs. A CF patient requires more than double the number of kilojoules in their daily diet because of the mal absorption of foods taken in and the fact that they cannot be digested.
The fact that the disease is the primary cause of her poor nutrition, can be helped by the intake of artificial enzymes, called Creon 25 000.  These capsules are taken before and during a meal or snack and replace the enzymes required to break down the foods ingested.  In other words they do the work for the pancreas which does not function properly due to the thick sticky mucus that is secreted and blocks off the release of the enzymes required for this function.




                       Administering IV Medication

NiQi has had Intravenous (IV) medication so often over the years and with each admission, the veins in her arms developed phlebitis more and more frequently.  Each time a new needle had to be inserted to set up a drip site which caused undo pain and stress.  In 2009 her doctors decided it would be best for her to have a portocath inserted under the skin, giving a direct line to her heart and making it easier to administer any IV medication that she needs.  Since then she has had two removed and a third one inserted due to blockages and infection that occurred.  The use of the portocath is a much better option than the needle in her arm and when not in use is flushed through with saline to help keep the line open and prevent further blockages



                       





                       Options for a Lung Transplant

We had discussed amongst ourselves before seeing the lung specialist, the possibilities of funding such an operation, should he feel it might be possible.  Our initial thought was to try fund-raising as NiQi is not on a medical aid.
When he broached the subject of how we might pay for the operation, he dissuaded us from fund-raising as he said it is far too much money to try to raise as it would be in excess of R1 million and if there were any complications that arose after the procedure we could be looking at millions more.  He advised us to put NiQi onto a medical aid and then look at attending Charlotte Maxeke Adult CF clinic as all the lung transplant patients are cared for from there, pre being entered onto the transplant waiting list.
It has been a long complicated process, but finally NiQi is on a medical aid.  It is unfortunate that due to rules and regulations of medical aids, NiQi now has to wait out a years’ exclusion period before she may either claim from the medical aid or be entered onto the lung transplant waiting list.







                  Fabulous and Fighting CF Trust

October 2012 a trust fund was set up with the hope of raising the much needed funds to cover a lung transplant.  At the time we felt it was our best option in the situation, not realising that through an executive decision made some time ago by the lung transplant team, they would not consider performing a lung transplant unless the patient is on a medical aid.  This information was only conveyed to us about 8 months after seeing the specialist pulmonologist, however we are hoping that if we raise enough funds, that they will rescind their decision and NiQi will then be able to be listed for a bilateral lung transplant.
NiQi was up to the end of July 2012, working at a local accounting firm as a data-capturer.  She resigned due to ill health and until her transplant is not expected to work again.  Due to this, the trust fund is not only to gather funds to be put toward the transplant operation, but also to pay the monthly medical aid contributions and pay for any other treatment or equipment that she may require pre transplant.

How can you help?
The banking details for the Money Market Investment account in the name of The Fabulous and Fighting CF Trust are as follows:

The Fabulous and Fighting CF Trust banking details are as follows:

Bank :                                  First National Bank
Account Name :                  The Fabulous and Fighting CF Trust
Account Number :              (ZA) 62371509062
Branch :                               Midlands Mall
Branch code :                     250655
Account Type :                   Current

Swift Code                           Firnzajj





3 comments:

  1. I have just read your struggle with this debilitating disease. You have tremendous fortitude, God indeed has blessed you with a loving and supportive family and care. I hope you do not have to wait long following the end of the exclusion period for the required treatment that will restore your life. In the meantime I will pray for you and look forward to hearing about your progress.

    ReplyDelete
  2. I absolutely adore you my cousin. And my amazing aunt and uncle for loving her so unconditionally. xxx

    ReplyDelete
  3. I absolutely love you my cousin. And to My Aunt and Uncle for loving her so unconditionally.

    ReplyDelete

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